Alisa Brownlee, ATP, CAPS blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.
Email--abrownlee@alsa-national.org.
Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of the ALS Association.

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Tuesday, January 14, 2014

Every student on an IEP must have assistive technology considered, unfortunately, this does not always happen properly. This webinar will discuss what should happen to properly consider AT in an IEP meeting and will show several examples of consideration forms used in various states that can help guide the process. Attending this webinar will make you better equipped to consider AT in the IEP process.

The folks from The Eye Tribehave been working on their gaze/eye tracking bars for an year now. The team has now displayed their gaze tracking technology in the form of an infrared powered micro-USB dongle for Android smartphones. This demonstration includes playing Fruit Ninja solely using gaze tracking and no use of hands, which is quite a cool feature for this day and age. The purpose of this technology is to make touchscreen devices more easy to use by limiting the use of hands. However, this technology is still in its infancy and The Eye Tribe is only marketing this new product as a proof of concept rather than a user purchasable device.

The makers reportedly want manufacturers to adopt this technology right within the core of their devices instead of having to use it as an external accessory. The Android dongle isn’t available for sale at this point unfortunately, although the PC or Mac compatible eye tracking bar is available for purchase with a $99 price tag through its website.
We have seen Samsung make tremendous inroads with the eye tracking technology through its devices over the last couple of years with features like Smart Stay, Smart Scroll etc which judges the eye movements of the user. The upcoming Galaxy S5 handset is reported to feature an Iris Scanner, which will be Samsung’s answer for the fingerprint scanner.

A Toronto woman with Lou Gehrig's Disease uses a device to blink out the letters and punctuation in her short stories and poems.

Richard Lautens / Toronto Star Order this photo

Zehra, and her husband Sinan in their dining room in the Lawrence and Don Mills area where she does her writing. As she can no longer swallow, a moistened paper towel is periodically placed in her mouth.

Zehra Madenli has written thousands of words; each painstakingly slow, her eyes carefully scrolling across the screen, blinking out each letter, space, and punctuation mark.

It is a labour of love. It is one of the few things she has left.

Since 2009, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, has robbed Zehra of the ability to walk, talk, eat and bathe herself.

She retains control only over her eyes and bladder. Eventually the neurodegenerative disease will kill her.

She is one of between 2,500 and 3,000 Canadians living with ALS. There is no cure and no treatment. Most patients diagnosed die within two to five years.

Zehra, 48, has now lived four years, but at cost.

“It’s been hell,” said her husband Sinan. “It’s a death sentence.”

Every year Zehra lost another ability — to walk, to talk, to swallow — and Sinan fell into a deep depression and developed his own health issues.

“In two years time she was totally wiped out,” he said and so was he.

Sinan uses a walker to get around, his diabetes is particularly bad now and he is on disability; money is tight.

“Most of our friends abandoned us. They just wouldn’t show up and I would say why don’t you come visit? She misses you, she’s a normal person and they’d say, ‘Oh we couldn’t stand seeing her like this,’ ” he said. “That really sort of pissed her off.”

It also triggered Zehra’s writing, which she posts routinely on her website.

The device, which looks like a computer monitor and is attached to a table, tracks her eye movements. Once she’s looking at it, a blink will select the letter, serving as a click of the keyboard. A computerized voice then vocalizes Zehra’s words.

Writing a single short story can take hours.

She writes in Turkish, her native language, and has won a few short story awards for her work in Turkey. The couple hopes to turn the short stories and poems into a book.

New friends and supporters translate the stories into English, French and German. Zehra doesn’t edit and doesn’t erase; Sinan goes through and corrects any errors.

She isn’t the first person to blink-write. Jean-Dominique Bauby used blinking to write his memoir, , which was later turned into a movieThe Diving Bell and the Butterfly, which was later turned into a movie.

Some of Zehra’s stories are also very personal, some functioning as love letters now that she can no longer hug or kiss her husband.

“The treasure for my eyes, the light for my darkness, companion of my hardships,” wrote Zehra of him in one piece. “My doctor, my nurse, my arms and hands, my legs and feet, my voice.”

“I’m honoured,” he said, wiping away a tear. “It’s tough, it’s quite difficult to talk about, things are not normal. I thought it was tough before but it’s tougher now.”

The couple is now trying to raise $10,000 for ALS Canada, money that will go to improving quality of life for those with the disease as well as research for a much hoped for cure, at minimum treatment.

Zehra is nothing short of inspirational, said Dav Cvitkovic, vice-president of fund development and marketing for ALS Canada.

“What this story says is that despite having such a devastating disease (people) persevere no matter what,” she said.

Monday, January 13, 2014

ALS robs patients of movement, speech -- and very quickly -- LIFE. It is a disease that nearly a thousand Ontarians are battling right now. And there's no known cause, and no cure. But one Toronto woman is refusing to be trapped inside her body. Nil Köksal explains how she's creating a new life for herself.

Many may have seen early posting related to the Message Banking Model created by Costello at the ACP where many people with neurodegenerative conditions have banked hundreds of legacy messages prior to losing the ability to speak and the messages in their own voice are then incorporated into communication technology. In this video, the artist Jon Imber demonstrates how he has modified his method of painting and entered a new chapter in his career secondary to ALS. Jon has... also participated in the Boston Children's Hospital Augmentative Communication Program model for Message Banking his voice. He now has hundreds of personalized words, phrases and comments incorporated into technology using his own biological voice (a brief glimpse of this at the start of the video) He also completed the Model Talker project and has a synthetic voice for generative messages that approximates his biological voice. For more information on Jon' work, go to http://jonimber.com